Can you take us back to what started all
this—Samantha’s uveitis diagnosis?

Samantha was examined at school by a very
young doctor who saw something unusual and
suggested we see another doctor. I live in New
York City, where Dr. Brian Herschorn looked
at Samantha and saw it in two seconds. He
said, “You’d better sit down.” Uveitis is an
autoimmune condition, and a majority of
girls with juvenile rheumatoid arthritis [JRA]
have uveitis. If you have JRA, you have a 75
percent chance of developing uveitis. If you
have uveitis, you have a 20 percent chance of
developing JRA. As a parent, you suddenly
find yourself learning about something you
never heard of.

How horrifying. What happened next?

With uveitis, all roads lead to Dr. Stephen
Foster at MERSI, the Massachusetts Eye
Research and Surgery Institution. We went to
Boston and he explained the prognosis. The
problem with this disease is that many doctors
throw topical steroids at it, but they can
cause blindness if they’re overused, because
they cause cataracts. Dr. Foster’s research said
that systemic chemotherapy drugs are the way
to go. Because of the connection to juvenile
rheumatoid arthritis, they had to do a lot of
tests to ensure that Samantha had nothing
else, so it was an entirely long-term thing,
with constant observation and multiple doctors—
including JRA specialists—to monitor
her while she was on medication. The two systemic
drugs are cancer drugs—Methotrexate
and Remicade. They use drops to lower the
inflammation immediately and systemic
drugs to hold back inflammation. A certain
percentage of girls between 17 and 18 go into
remission, because the body’s immune system
develops and the body stops it. You take your
child to checkups every three, six, and nine
weeks, and you pray that the cells did not
come back. And then come the drops to pull
them back, and how many cells and floaters
are in the back of the eye, and with every step
backward, your heart sinks.
Methotrexate and remicade are potentially
toxic, right?

Yes, absolutely. Methotrexate did not work.
Remicade is a wonderful drug with two
problems. First, it costs $20,000 a dose—or $19,700 if you have insurance—and is
administered intravenously in a cancer ward.
Second, it lowers the immune system so much
that you get sick all the time. But it holds
back the inflammation. Samantha went to
New York-Presbyterian Hospital for a threeyear
period for the monitoring of possible
juvenile rheumatoid arthritis complications
that come with uveitis. But she would look
around at kids with cancer and say, “They are
way worse off than me.” She went through
treatment, was clear for six months, and then
it came back with a vengeance and she had
to start on a new drug called CellCept. It’s
an organ-rejection drug that she took for
two or three years, and it held the inflammation
back. Her vision is 20/20 now with
contacts—she’s nearsighted, like her parents—but she has the beginning of cataracts because
of the eye drops.

CellCept is self-administered, so the
efficacy is debatable, because my daughter
had to take three pills twice a day and not
eat for two hours before or after taking
the medication. There had to be another
way. So now she is on HUMIRA, which is
injected every two weeks by a doctor, and
she has responded well. She’s been on it for
four months and her eyes are clear. She will
stay on it for two years and then wean off of
it and see what happens.

Dr. Foster sees her, as does Dr. C. Michael
Samson, of New York Eye and Ear Infirmary,
who was trained by Dr. Foster. Dr. Herschorn,
Dr. Samson, and Dr. Foster are in the loop
with Samantha, her mother, and me.

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